I am probably like many of you at my wits end with Doctors. My Doctor GP does not seem very knowledgeable although he does listen and try to help me with my symptoms. I would like to find a Dr. that has the most up to date information as well as knowledge and experience. I live in NY and there is a center in CT. I know they do not take insurance as well we all know how horrible insurance companies are nowadays. I have been to many Dr.s it seems they give me the old learn to live and bear it speech. Fibro fog cutting me off since I have a child calling for me and one climbing on me. Any good or bad stories please share. Where have you found most of your support medically.
Please don’t waste your time and money on this clinic! I went to the FIbro and Fatigue Center in Atlanta, GA for a year and spent about $10,000 and saw no improvement! I got a friend to join after I started and unfortunately she got sicker and sicker. We both did the full treatment, vitamins, herbs, IV’s with numerous ingredients, antibiotics, antivirals and hormones. Most doctors agree that their protocol is DANGEROUS! My friend ended up hospitalized with her hormones out of whack. They treat everyone’s thyroid and prescribe cortisol for everyone. It permantly damaged my friends thyroid when it was normal before going to the clinic. They are very understanding and compassionate and that’s what reels us in. I’ve never felt validated by a doctor until I went there. Trust me, it wasn’t worth it. They’re getting rich promising things they can’t deliver. They told my friend and myself and had it in there literature that they had a 98% cure rate. They have since been sued and no longer tell that lie. I don’t know anyone who got better while I was there.
In my opinion your best bet is to see a rheumatologist who is trained to diagnose fibro. The rheumy that dx’d me is the most knowledgeable doctor I’ve been to on the subject. She took a lot of time talking with me about the various ways to deal with fibro and about the sleep disorder I have that does along with it.
Oh Lisa, what a horrible experience. I’m sorry you and your friend were put through all that, but certainly no one here can blame you because we’re all wanting to find that doctor or clinic or treatment that can finally give us real long term relief, if not a cure.
Lisa Duffy said:
Please don’t waste your time and money on this clinic! I went to the FIbro and Fatigue Center in Atlanta, GA for a year and spent about $10,000 and saw no improvement! I got a friend to join after I started and unfortunately she got sicker and sicker. We both did the full treatment, vitamins, herbs, IV’s with numerous ingredients, antibiotics, antivirals and hormones. Most doctors agree that their protocol is DANGEROUS! My friend ended up hospitalized with her hormones out of whack. They treat everyone’s thyroid and prescribe cortisol for everyone. It permantly damaged my friends thyroid when it was normal before going to the clinic. They are very understanding and compassionate and that’s what reels us in. I’ve never felt validated by a doctor until I went there. Trust me, it wasn’t worth it. They’re getting rich promising things they can’t deliver. They told my friend and myself and had it in there literature that they had a 98% cure rate. They have since been sued and no longer tell that lie. I don’t know anyone who got better while I was there.
Thank you ladies for sharing. The last thing I want to do is throw my money away but like you mentioned sometimes dealing with this and finding someone who shows compassion keeps us going back. I’m sorry Lisa for your experience with them but I appreciate your sharing it with me. -Lynn
Wow what an interesting experience. So do they claim to be a natural wellness center? I’ve never gone to any of these clinics (thank goodness) but I had wondered how they work. That is a high price tag for something that didn’t work. Actually it seems high for if it had worked to me.
I really believe you dont need a clinic to help with fibro. You may want to get some diagnostic tests done at your doctor’s office but there is little else a doctor can do. You can try your own remedies though. I keep testing and trying things.
I don’t get using antibiotics at all. The good bacteria always die first with antibiotics. Then the imbalance is worse. Probiotics are what will get the good/bad bacteria levels in check.
Vitamins seldom work unless you happen to have a deficiency in something and then of course you will feel better if you take it. But that would be a co-existing problem and not the cause of fibro. Same with the thyroid problem.
A blood test should tell them if you need T3 or other hormones. Some people have symptoms even if their within the ‘normal’ range. So if it’s on the low side or high side, try a little something but low dose and watch for symptoms of too much.
The thing I would try that works the most is acupuncture - it helps but for many it only lasts 2-3 days so that wont work long term. It’s worth a shot for many tho. Reflexology feels good but I don’t know of it helping long term either.
I have also read about how colostrum helps many. Most the testing has been done with Lupus but it hurts nothing to try it. It will only help.
Gaba is also worth a try since it nourishes the nerve endings.
I’ve tried lots of other natural methods but outside of magnesium, CoQ10, enzymes and probiotics little has made any difference. They do not all add up to cost that much in a year so I will keep taking those things.
I have found that antioxidants can make me worse.
Stretching, exercise, deep breathing, relaxation and getting a good nights sleep all help more than anything else. Get the toxins out of your life too.
I also spent a load of money on the clinic up in Atlanta. I didn’t see any improvement, either. Plus they loaded me up with a case of supplements that got to be a real pain to try and keep up with. I’ve pretty much been through the gamut - I went to a top rheumatologist who said there was nothing more he could do but prescribe Cymbalta. I tried antivirals from a Dr. who said this was the cure - no change. I’ve tried acupuncture (couldn’t tolerate it), I’ve been tested for Lyme’s disease (neg) sleep apnea (neg) I had my nutritional levels tested by Spectracell through my Dr. in Gainesville, FL who offers alternative therapies, so at least i feel like I can pinpoint the supplements I need. Right now my goal is to just do everything I can for good health, but that’s pretty hard to do. I have Chronic Fatigue and for me that’s worse than the fibro. Now I am trying chelation therapy with EDTA because I tested high for cadmium, and wonder if anyone else has had success with that. Other than that, it’s just sleep, sleep sleep.
Sorry to hear about the fatigue. I have fatigue but it's not CFS. It is one of the worst symptoms.
I really think it is worth it and was not a waste of time trying the various things you have done. Since we each respond differently, we each have to be our own laboratory for experimentation.
I found out a few months ago that my fibromyalgia is caused by dysautonomia. It is a dysfunctional autonomic nervous system.
Not everyone with fibro has that but many do. There is a lot of research being done on it now in clinics around the US and around the world. Vanderbilt is one that is doing a lot of research.
Tachycardia, blacking out when standing up, cold hands and feet, hot hands and feet, a mitral valve prolapse, blood pooling in the legs, over-reactions to stimulants... here's a list of symptoms: http://www.dinet.org/symptoms.htm
It may not fit your situation but since I found out about it everything makes so much more sense.
I know people who have gone to the Atlanta clinic. No improvement. A lot of money. In some cases, they got much worse due to medication side effects. And Dr. Bullington there was recently reprimanded by the GA medical board.
Wow…I am a patient there and I feel so much better since I have been going there.It is a very detailed process u have to take your supplements keep to a healthy six small meal diet go every three weeks for if IV treatments athree weeks for ur IV treatments and u will feel better. I am not sure what happened with u but it is totally working for me. They also have just discovered that taking HCG in larger doses than what people do to try to lose weight helps FMS patients tremendously.
Hi, I agree with Lisa, don’t waste your $! I went to their clinic in Ft. worth. Cost a fortune. They put me on a sleep med and it almost killed me. Sue
I guess everyone is different. The clinic helped me tremendously. I also have spoken with other FMS patients there and they have seen improvement, especially with the IV treatments. It is not a cure but it has helped me. I still have flares mostly due to weather. FMS/CFS affects everyone differently. There are so many variables and degrees to this syndrome. Sorry that the clinic did not work for you. How often did you go? I did not see improvement until after eight months into the treatment.
Not sure if they are related, but a Dr. Spurlock at the Dallas Fibro and Fatigue Center has been sued more than once for lack of initial contact with patients before ordering almost 100 blood tests. Don’t remember details (we all know how that goes) but he was sanctioned by the AMA fined and put on probation.
According to a friend, the clinic is set up to do blood tests which Dr. Spurlock claims normal ranges are not normal so that they can provide you with multiple products that he has helped develop.
Don’t know why Texas is still letting him practice. They ordered him to take classes on proper assessment and medical examination procedures.
From what I read before finding all this out is that unfortunately his group is actually on to something that helps. They understand that the HPA axis is involved and do direct some of their therapies at correcting these levels. Just wish he wasn’t a crook.
I would ask your GP to see a rheum as well...and ask him about if they have heard anything about this clinic. You can go online as well...or check out their website. If it gives information about who their doctors are and what their treatment plan is about...check them all out online.
I also first see rheum and also ask them what they think. IF you do not respect either your GP or Rheum you are seeing..take their opinion as just that..their opinions!
I think what you have done here is excellent place...if there is local Fibro support group and sure there is in Atlanta area, i call them and ask what their experiences have been too.
I have heard some positive results from other Fibro only clinics....but all are not the same. So do exactly what you are doing, educate yourself before going.
As to TX doctor...we have Psychiatrist who does not see patients..PA do..and they have made so many incorrect diagnoses it would be funny but people are over drugged and many believe blindly what was said so they are zombie people due to them.
This doctor was found guilty of falsifying his insurance records..stating he saw patients where it was rules he agreed too...also for over drugging ..malpractice on adults and minors..here(CA) and Colorado.
He still is practicing as well...was only one in this area for over 10 years and place he was practicing had over 250,000 population so not tiny as my town of 3000. He still has to be falsifying because it is requirement of our insurance...my husband goes for depression drug...and still never sees him. I think one of worse things is old boy network in medical as well as law enforcement...they do not turn in bad co workers.
Happy holidays...let us all know what you find out...if you go or not too please us know how it went.
Save your money. I went to the clinic in Ft. Worth. They put me on the very addictive drug, Xyrem, better known as the date rape drug. I almost died. They do intravenous vitamins, plus some other voo doo stuff. I spent thousands of dollars there. Now that does make me sick! Sue
Call and ask on the phone! You might hit office person who might know other rheum they do work with. I also belong to same fibro and pain online magazine and really enjoy it.
Like i said...i have heard both good and negative before this was asked here. I really do not think what happens at one out of your state could be same as one in your state....unless it is chain of doctors. Most of the fibro centers i have read about are independent...in fact i do not know of any chains.
Also ask if they know of local support group in your area and go to them and ask people attending. Even the leader might be able to help you.
Are you in atlanta as well....i could as a friend of mine who is medical transcriptionist...works in hospital there as well as from home. She might have heard something about them...but odds are i do not think so but i could try.
It is very hard to find doctors that you click with....but once you do...oh your life will be so much better!! i did have that and i was so much healthier....took so much stress off knowing that if i should get seriously ill ...from my other health problems....i knew they do everything in their power to help me!
Now...i doubt they stay over time to help me!
So i ask around at that fibro and pain magazine and ask them....cannot hurt!
